Hi I’m a new member & need advice Re OC surgery please

Hi, im not expert but my mum is going through similar. She is 76 and relatively fit. She has AF ( Arterial Fibrillation) so she was advised to go for Radical Chemoradiotherapy as a curative path because the surgery might be too severe for her however they will consider salvage surgery if needed. We are currently waiting for the results of her CT Scan 6 weeks post treatment. She coped quite well but it was tough going in places.

From what I've learned Chemoradiotherapy produces similar outcomes as surgery for Squamous Cell type, can I ask, is that the type of cancer you have? My mum was T2 ?N1 M0 (the question mark was because she had one slightly suspect lymph node but they weren't sure.

She had two rounds of chemo (4 week cycles) to take care of the Lymph node if it needed it and then another two cycles of chemo with 25 weekday radiotherapy treatments. 

I wasn't aware of the high dose therapy so I can't advise on that. 

Did they not give you a recommendation but allow the choice, that's what happened with my mum so we just went with that.

Sorry you are going through this, and I wish you all the very best.

Chris

Hi Chris 

thank you so much for replying , I’m sorry to hear your mum has been going through similar , I wish you all the best with your mums results & hope it has been successful.

my cancer type is Adenocarinoma . I know they felt surgery was the best option but knew my thoughts about this , however after speaking with the oncology nurse she has put a new spin on things for me which has only confused me more , as I was thinking of going on the trial but now I feel what if I make a mistake & I should of opted for the surgery (I’d been reading all the statistics which scared me) the nurse said you will never know if you’ve made the right decision. 

it would be nice to know who has had this operation and doing well 

Shirley

Hi again, in my limited knowledge of Adenocarcinoma I have definitely picked up that surgery does give the best outcomes. For Squamous which my Mum has Radio and Chemo works well, but for Adenocarcinoma surgery is usually the preferred route (it may end up combined with chemo regardless! 

I really hope some people can respond in time but in looking through this forum you should find plenty of examples. I know the operation is quite significant but I read stories of people recovering significantly within a few weeks. 

I know if it was me I would go with their recommendation. Its a massive decision for you I realise but if you take their advice I think it will remove the "what if"

I really hope for the very best for you and my thoughts are with you. Please have a search through the forum and hopefully some will reply to this too.

Good luck and please keep in touch x

Chris

Thank you so much for taking the time to respond , it means a lot . Yes I will update Re option I choose all so scary x 

Hi Shirlj

My husband has adenocarcinoma OC, unfortunately he is not suitable for surgery, It seems a positive thing from my perspective that this might be an option for you, but only you will know if that is truly the case.

It is such a frightening time when the initial diagnosis is revealed and then options are placed before us, i know you have probably gone past your deadline, but I do hope that you feel happier about whatever decision it is that you have made. 

Thinking of you

Lowe'

Hi there Lowe,  I was sorry to hear your husband is not a good candidate for surgery but I wish him well with what ever decision he makes. I have made my final decision and have started along the path that will eventually lead me to surgery. I’ve had more consultations and long telephone conversations with my GI CNS nurse, also  more tests and scans with more to follow over the coming week. In 17days time I am due to start treatment with chemo every Monday for five weeks, and at the same time over that five week period radiotherapy every day Monday -Friday which means a double whammy on a Monday. I will then have an 8-10 week break to get my strength back and then undergo surgery, I’m not sure during that period if or what tests will take place, I shall probably find that out during my pre procedure consultation which is scheduled to take place five days before treatment commences. I don’t think I can put into words how frightening the whole situation is, butI’m trying to take each day as it comes,I don’t want to look into the future, enjoying seeing my family has been a bonus. I am due to start isolating again on Tuesday, which doesn’t fill me with joy, my daughter and husband are wonderful and will form my support bubble.

 I’m quite a technophobe and even find getting onto this site a major task but I will try from time to time to update my posts.

it would be great to hear from anyone in the same situation, sending all my best wishes to all fellow cancer patients especially those who have responded to me, will be thinking of you all. 

Much love Shirley 

Hi Shirlj

Im also a new member snd I don’t normally enter into online chats as I’m also a bit of a technophobe, or so my pals say, but I felt compelled to reply to your heart felt plea. Firstly may I apologise for not replying sooner!

Last November I was in exactly the same situation with the same diagnosis. I write to suggest that you’ve absolutely made the right choice.... 100% !!!

The trials team are excellent and with you every step of the way, you get that little bit more support than you would normally, which is good for me for I like been pampered : )

Every Monday you will have blood tests and they’ll monitor your weight.

In December 2020 I started chemotherapy and radiotherapy every day for 5 weeks.(same as you) I had surgery at the end February. Most of the forums talk about positivity and the are absolutely correct. I treated my whole experience from the start as a job on my to do list... chemo today, tick done ! what’s next, back to work.

For me I had to make my journey a positive one, the people you’ll meet on your journey will be strong, resilient, loving and supportive, you will make new friends that understands and get it, you are not alone with every step or stage. Your family and friends will take support to another level, it’s quite humbling.

Tips if I may ?

Drink lots of water... lots!

Get a diary, log every aspect of your journey, you will see your development and how far you’ve come and if you feel a bit under the weather look back and you’ll be amazed how well you are doing.

Exercise / keep active... so important!

Don’t over think it. Don’t read the statistics you are you and you’re in charge !     

If you need any help with anything no matter how large or small, if you want to know what’s the next stage and what’s expected PLEASE just ask.

I’m in no doubt you’ll take it in your stride, mine and my families thought are with you. Good luck.     

Thank you so much , it was great to hear from a fellow technophobe, your lovely message really lifted my spirits and helped me feel more confident about my decision. Like you I’ve stopped reading literature with lots of statistic as  I started to find it rather depressing and it was also clouding my judgement. Once I started to read  other people’s positive experiences my mind cleared and I was able to make my final decision and start my journey. My working days are over but I want to get back to my voluntary work and more important I want to see my youngest grandson in his passing out parade, it will be a very proud day.  

 Sending everyone many good wishes and  good luck for the future.

Hi I have had the surgery and don’t regret it at all at least I knew the cancer was cut out and gone , I am two years on and doing well , try and think positive thoughts ahead and don’t think about the surgery too much , it’s major but it’s doable and pain wasn’t an issue onwards and upwards is my Motto now and I am lucky to have been given hope xx

Hi everyone, hope your all doing well with your chosen treatments and recoveries. This is my first up date for a few weeks, as a technophobe it’s taken me a few days to find my messages and I don’t know if I’m putting them in the right place...’.Thank you Jackie, it’s good to hear from someone who is a couple of years down the line after surgery, I am positive that I’ve made the right decision and definitely not giving it much thought. I’m taking each day as it comes and ticking off each procedure as they occur. just over 2weeks ago I had an endoscope ultrasound, followed by blood tests and covid swabs and then a laperoscopy Tuesday last week, today I started a 23 day program of chemo and radiotherapy, Monday’s being a double whammy, every Monday I have both, one after the other, and then the rest of the week it’s radiotherapy every day, with a break at the weekends. I even went for the cold cape, I didn’t find it particularly cold, it was more uncomfortable with the pressure  but I survived and only 4 more of them to go as its only on for one of the chemo drugs, it’s worth that bit of discomfort if I can retain my hair.  Wishing you all well, I’ll try updating in a couple of weeks time if I manage to find this blog again.  Much love,think of you all xxxx